“He’s such a good kid. You’re so lucky.”
I get that all the time. I AM lucky. He IS a good kid.
“You really lucked out. He’s such an easy kid.”
Again, my husband and I always marvel at how we got the perfect child. He is simply perfection and I will not go too deeply into why (maybe I am a bit superstitious…)
But an easy kid he is not.
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To the outsider, my big boy is just that.
He’s smart. He knew the alphabet by age two.
He’s easygoing and amicable. He’s quick to warm up to family and friends. And he has a witty sense of humor.
But easy he is not.
Oh, yeah, when we’re with others he is. But then we go home and the frustrations begin.
I am no stranger to sensory issues, and, once again, to protect my and my family’s privacy I will not elaborate. But that is definitely a part of what I see my son dealing with.
At the same time, he is a “coper”. Meaning, in certain environments he’ll find within him the tools to compensate for his challenges. I was the same way. When I couldn’t focus in class, I would doodle. It would frustrate my teachers to no end, but my grades were good, I was always participating in classroom discussions, so they let it go. They did not know that I was compensating, finding the survival tools that G-d granted me along with all my challenges. I couldn’t study unless I was listening to music…
M is the same way, but at three, he’s limited. I don’t want him to go through what I did. I don’t want him to struggle like me. I want him to thrive. I want him to reach beyond his full potential. I want to be championing him along the way.
That’s why I took him to be evaluated.
And that was just the beginning of my frustrations.
At first I had a hard time verbalizing what was wrong. That he wouldn’t eat because the moment his hand got dirty he’d throw a fit? That he couldn’t use the fork because he didn’t have the coordination and skills and so he quickly gave up?
“He’s too old for feeding therapy, but we’ll evaluate him anyway.”
What? Feeding therapy? But it’s not the feeding that’s the issue. It’s the feeling. The touch. The fine motor skills. The core strength.
Needless to say, he was not eligible. Borderline, but not eligible for feeding therapy, which was really the focus of their evaluation for some twisted reason.
Later on, I spoke to a fellow mom who told me that you need to have the right person, at the right time of day, say the correct trigger words, and your child must be the perfect age for that exact therapy. And that you have to go maybe five times before you can actually make progress with them.
How sad, how disappointing, how frustrating. The people who are supposed to be partnering with me, to help me help my child, they can’t listen to me. They aren’t hearing what I’m saying.
A large part of the evaluation is based on parental feedback. As I read through the results, my frustrations grew. Apparently I had told them that he can respond to “Wh” questions accurately. No way I had said such a thing. And that’s just one example, an indication of the degree to which they were not listening to me.
It did not start or end at his evaluation. There were multiple times in the past year when I felt as if his caregivers were not on the same page as me. There were many times when I felt like my village, the people who help me raise my child, are simply not listening to what I have to say.
It feels like I’m trying to move a brick wall, single-handedly.
We are unfortunately raising our children within a system where some do get left behind.
And I will NOT allow my child to be left behind. I will stand up for him. I will defend him. And I will pull out the coping mechanisms of my own childhood and use those to guide him.
What to do when you feel like you’re trying to move a brick wall
I’m not writing this just to vent. Granted, I’m crying as I write, and it feels good to let it out. But for me, it’s about a plan… Here’s mine:
Communicate: As much as you can, communicate with your child’s teachers. I am blessed that M’s preschool teacher is understanding of such issues, and is happy to talk to me about it. She has provided insight into issues that I couldn’t have noticed (such as core body weakness) and is there to encourage him.
While it may be hard to communicate with the “powers that be” when you’re hardly given five minutes, those that give ongoing care should always be there for your child.
Most importantly, communicate with your spouse. Make sure he is on the same page as you. “Use your words” like you might tell your preschooler to do. Tell him what happened, how hard it was. Voice your frustrations. It will only bring you closer. My husband is my strongest pillar of support through all of this.
Educate yourself: Again, I am lucky to be dealing with this at a time when information is so readily available. Join Facebook groups with like-minded moms. Follow along with blogs that deal with the issues you are facing (Sugar Aunts is a blog run by an OT and a favorite of mine.)
I am currently taking an online Sensory Processing 101 course run by someone I know. It is very affordable – much more so than any therapies might be – and easy to consume, with actionable steps. It includes background information, and actual things you can do to help.
Find solutions: Besides the lessons I am learning in the Sensory Processing 101 course, I spoke to M’s preschool teacher (as well as the organizer of the course), who suggested various things for him. Here are some of the ideas we are implementing:
- Tummy Time: With a baby in the house who gets regular “tummy time”, giving M activities to do in the prone position is the easiest. It’s “tummy time just like Baby Y.” He colors, does puzzles, plays with LEGO, etc in this position.
- Drum Therapy: I got him an inexpensive drum practice pad and drumsticks. It helps with building his core strength while helping his auditory seeking needs. And it doesn’t make the same racket that real drums do. IF you want something more kid-friendly (but not nearly as quiet) a kids’ drum set is great too.
- Swinging from his arms: Since it’s cold now, it’s hard to take him to the playground. So we have “exercise time together” which he absolutely loves. Bonus: I get a workout too. You can research core-strengthening activities age appropriate for your child, but meanwhile you can also find tools that he can use during play time that doesn’t involve you. Some favorites include indoor gymnastics equipment, a scooter board (to navigate with his hands, on his tummy), a play tunnel for crawling through…
The tools are out there, and easier to find than ever.
Don’t forget yourself:
Yep, mama, you count too.
Yes, reader, I am talking to myself. I am trying to drill it into my own brain.
It’s okay if I need to unwind a bit at night, and the dishes haven’t been washed yet. It doesn’t REALLY matter if the floor doesn’t get mopped this week. It’s a sanity break. My sanity counts. My child needs me sane. I am doing it for my child….
Because when we can’t convince ourselves to do it for ourselves, at least we should do it for the child, right?
Remember that you’re not in it alone. It has nothing to do with your parenting skills.
Part of the package that having a child comes with is constant guilt. I’m a Jewish mother. I know all about guilt.
But I need to talk myself into accepting my decisions. I need to constantly drill into myself that it’s not because of my failings. The same G-d that gave my child his brain, his amazing personality, his brilliant eyes, also gave us this challenge, because He know we can get through it.
So when I feel like I’m trying to move that brick wall, when I feel like I’m alone fighting the world for my son’s sake, I remind myself that there is Someone I can reach out to Who CAN move brick walls.
And I remind myself what my son has WITHIN him that is not a brick wall. It’s a precious heart and soul that has the power to overcome.
He just needs me to hold his hand.